Our beautiful, gorgeous little girl, Anna, has leukaemia. She was diagnosed on Monday 5 December 2011.

We seemed to spend most of last week in one or other of the above – both planned and unplanned visits.

We are very lucky to be supported by Rachel house Hospice, in Kinross, part of CHAS (Children’s Hospice Association Scotland) and get to go there several times a year for a short break. As the children were on holiday Monday and Tuesday last week, I booked a couple of nights from Sunday onwards.

When we are there, I feel like I can be Anna’s Mum again instead of her nurse/physiotherapist/occupational therapist/carer etc. as everything is done for her. I get to sleep for a whole night without being woken by Anna (I’m always so tired from interrupted sleep). I don’t need to use a hoist several times a day to take her the toilet or to give her a bath. I don’t need to give her medicines – the nursing staff will make sure she has them and keep an eye on her temperature. I don’t have even have to help her with her food – she has somebody with her the whole time to look after her. And Anna just gets to be like any other five-year-old girl – doing arts and crafts, chasing people up and down the corridors, watching TV and just generally having a fantastic time. When she is doing all that, Nathan gets to chill out with Xbox or PlayStation or just spend some time alone with me. I always take a book with me as its one of the few places I get a chance to read.

A huge thank you to CHAS and all the team who work there. It makes such a difference just knowing we can have a few days there every now and again.

Once we got back on Tuesday, we headed straight down to St John’s Hospital in Livingston to collect her new leg splints and (for the very first time!) school shoes. Because Anna isn’t weight bearing at all ie standing on her feet, there is a very real risk that the muscles in her ankle will start to contract and she will lose the ability to move her foot. The splints keep her feet as close to a 90° angle as possible so that when she can (hopefully) start to weight bear again, her feet will still go into the right position. Her new pair are pink and covered in a butterfly design – all these little aesthetic touches make it a bit easier for her.

However, the splints are so bulky that is almost impossible to fit normal shoes over them. The orthotist agreed to order some specialist shoes and Anna is now the proud owner of black shiny patent shoes. They have to be several sizes too big to fit over the splints but even so they look fantastic!

Wednesday was Anna’s last official intrathecal (general anaesthetic for chemotherapy to be injected into brain and spinal fluid), along with her bone marrow sample for end of leukaemia treatment. It means an early start – we have to be a sick kids in Edinburgh before 8 o’clock in the morning – and we are usually there until mid afternoon. Although officially it’s the last one, we still have one to catch up next month as she missed several because she was so ill at times. We normally try to do her 4 hour pomidronate infusion (bone strengthening treatment) on the same day, to cut down hospital visits, but we are slightly out of sync so will have to go back in a couple of weeks It’s a logistical challenge every time – making sure Nathan has someone to look after him in the morning when I take Anna in, and making sure I will be back before he comes back from school.

Anna was back at school on Thursday. I got a call mid morning asking me to come down as Anna had caught her arm under the table. For most children that wouldn’t be an issue – probably the worst that would have happened was a bit of bruising. But for Anna, who fractures without even touching things sometimes, it’s more serious. I checked her temperature before giving her some paracetamol and she insisted on finishing the day in school. Her arm continue to hurt overnight but she insisted on going to school Friday morning (golden time is so attractive!). However as it was still sore Friday afternoon, we headed into A&E at sick kids and went through the usual routine – assessment, x-ray, cast. They all know us very, very well by now. Anna has a lovely removable cast – it’s the first time we’ve seen this. It was fitted and then cut and Velcro put on so we can actually take it off for short periods if we need to. It does make a big difference. It’s on for a couple of weeks. She wasn’t keen on me taking a photo.

Mum and Mary came and took me out at the weekend and I also had a wonderful pampered chef night out on Saturday. All much needed!

Just a normal week.

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Anna is still in hospital and will be for at least another week, unless there is a dramatic improvement. Peter and I alternate staying nights and weekend days, and I cover most of the week days. It is a constant challenge to look after Anna in hospital and Nathan at home, managed with a huge amount of help from lots of you…

Anna’s temperature continues to be extremely high, as you can see below in her temperature and heart rate charts for the past few days. The temperature is the top chart in the pictures and heart rate is the bottom one. Normal body temperature is around 37 degrees (you can see a black line for this on the chart) and anything above 38 degrees is fever or pyrexial. The black dot in the vertical axis of the temperature chart is 38.5 degrees.

You can see the dips on the chart when she is given paracetamol. Her temperature dips for several hours until it wears off, then goes straight back up again. A lot of her temperatures are recorded at 40.4 because that is the highest that the tempa dot strips go up to. It is probably higher than that. Her last temperature was 40.4 on the strips but 41.2 on the tempanic (ear) thermometer.

Her blood counts are very, very low. Haemoglobin is still around 70 so she has had another blood transfusion. Her platelets and neutrophils are almost zero, and white blood counts around 20.

The medical team are still working to find the cause of the infection but have also considered that the fever and accompanying shakes could be a side effect of one of her (many) drugs. The anti fungal drug she was taking, ambisome, can cause fever and shakes so that has been replaced by another antifungal. She is on several intravenous antibiotics, some specifically for respiratory infections and some more broad spectrum. She is also on drugs to maintain her potassium levels, which had been low, multi vitamin/minerals, and a range of others on demand to address either pain (codeine) or any side effects from the others (eg ondansetron for anti sickness).

She is still quite unwell but not causing the same kind of concern as last weekend. However, it is clearly not good for anyone to have such a high temperature for such a long time, especially a 4yr old girl.

As well as continuing to search for the source of infection, the medical team are now also trying to identify the anticipated progress of the infection. If there is no change, she will have another general anaesthetic on Wednesday and a bone marrow biopsy. The biopsy should show if her blood levels are due to improve or not. Of course, they will add in any other procedures while she is under a GA such as taking a sample of the fluid from the still unidentified lump in her neck and fitting her splints.

The splints are to avoid contracture in her feet. Because she is using her feet and legs so little, there is a very real danger that her ankle muscles will shorten and become resistant to any stretching. So she may regain strength sometime in the future but her feet wouldnt work. She has had splints cast, which she did not enjoy, and it would be easier just to put them on her while asleep.

Anna didn’t want any photos taken for the blog today (she really is feeling rubbish) so I’ve put some in from before her leukaemia diagnosis.